深入了解自闭症：与汤米·马丁博士的深度对话 – 第72集

来自美国儿科学会。

From the American Academy of Pediatrics.

最近自闭症在新闻中频繁出现。

Autism has been in the news a lot lately.

对于正在应对新诊断的父母，或只是在网上接触到大量信息的人来说，听到人们如何谈论自闭症儿童，可能会感到困惑甚至沮丧。

And for parents navigating a new diagnosis or those simply hearing a lot of information online, it can be confusing and at times disheartening to hear how autistic children are spoken about.

今天，我们将拨开迷雾，让我们的对话不仅建立在证据基础上，更建立在真实的生活经验之上。

Today, we're cutting through the noise and grounding our conversation not just in evidence, but in lived experience.

一个人患有自闭症，或者以不同的方式看待和与世界互动，并不意味着他们就低人一等，也不意味着他们是负担。

Just because someone has autism and because they see and interact with the world differently does not make them less, and it does not make them a burden.

这意味着他们被误解了。

It makes them misunderstood.

他们最需要的，是一个努力去理解他们、更好地满足他们需求的世界，而不是试图去‘修复’本不该被修复的东西。

And what they need more than anything is a world that tries and strives to understand them to better meet their needs than try to fix something that's not supposed to be fixed.

欢迎收听《健康儿童》，这是来自美国儿科学会的育儿播客。

Welcome to Healthy Children, the podcast for parents from the American Academy of Pediatrics.

我是医生。

I'm Doctor.

埃迪丝·帕乔斯·桑切斯。

Edith Pachos Sanchez.

我是一名儿科医生，也是一位正在摸索中的妈妈。

I'm a pediatrician and a mama figuring it out.

这是一个无评判的空间，所有问题都是好问题，而答案 hopefully 会更好。

This is a judgment free space where all questions are good questions and the answers will hopefully be even better.

我们开始吧。

Let's get started.

今天我们要讨论自闭症，为此我邀请了汤米·马丁医生。

Today we're talking autism and to do so I have with me Doctor.

汤米·马丁是一位同时专攻内科和儿科的医生，担任儿科住院医师。

Tommy Martin, who is a combined internal medicine and pediatric physician and works as a pediatric hospitalist.

汤米，欢迎。

Tommy, welcome.

医生。

Doctor.

伊迪丝，能来到这里真是太棒了。

Edith, it is so incredible to be here.

非常感谢你邀请我。

Thank you so much for having me.

很高兴你在这里。

I am so glad that you're here.

现在这个时候，我想不出还有谁比你更适合和我进行这场对话了。

I can't think of a better person to have this conversation with right now in this moment in time.

我想从你的家庭故事开始，我们非常幸运，这些年来你一直在平台上坦诚分享。

And I wanted to start with your family story, which we're so lucky that you have shared openly on your platforms over the years.

你能分享一下奥利弗的情况吗？

Can you share a bit about Oliver?

是的。

Yeah.

我非常乐意。

I would love to.

对于可能不了解的听众，我有一个儿子。

And so for the listeners who may not know, I have a son.

他的名字叫奥利弗，他真的是世界上最有天赋的孩子。

His name is Oliver, and he is truly the most incredible child in the world.

当然，作为他的父亲，我有点偏心，但他确实是个非凡的男孩。

Obviously, I'm a little bit biased being his father, but he is truly a remarkable boy.

实际上，他的老师刚刚告诉我们，他是快乐的化身，我认为这真的非常贴切。

Actually, one of his teachers just told us that he is the definition of joy or joy in human form, and I believe that is so true.

我的儿子奥利弗患有一种极其罕见的遗传病，叫做拉姆·沙弗综合征。

And so my son Oliver has an extremely rare genetic condition called Lam Schafer syndrome.

全球只有五百人确诊患有这种疾病，因此它极其罕见，其特征是SOX5基因的缺失。

There's only five hundred people in the world with this diagnosis, so it's extremely, extremely rare, and it's characterized by deletion in the SOX five gene.

但后来，在他大约两岁半时，他还被诊断出患有自闭症。

But with that, later on in his life, when he was about two and a half, he also received the diagnosis of autism.

自从确诊自闭症以来，我一直大力倡导提高人们对自闭症的认识，帮助世界理解：患有自闭症的孩子和人群或许与众不同，但这并不意味着他们就 less 或价值更低，他们独特而美好，这正是最完美的。

And since having the diagnosis of autism, I have been a huge advocate about spreading awareness about autism and helping the world understand that children and people with autism may be different, but that does not make them any less or any less valuable and that they are uniquely, wonderfully them, and that is just perfect.

是的。

Yeah.

正如你所说，你在当前传播环境出现之前就已经在做这项工作了。

And you had been doing this work, as you mentioned, years before the current communication landscape.

所以我很好奇，你的医学训练是如何与你作为父母为自己的孩子应对这一切的经历产生交集甚至冲突的？

So I'm curious, how did your medical training intersect or even clash with your experience as a parent navigating this for your own child?

对。

Yeah.

这真的很有意思。

It was so interesting.

老实说，我和我妻子都是医生，我们其实一开始并不觉得儿子有自闭症。

Honestly, I think my wife and I, we are both physicians, and we actually didn't really think our son had autism.

我认为我的医学背景和一些专业训练，让我一度忽视了儿子可能患有自闭症的可能性。

So I think my medical background and kinda some of my training steered me away from my son having the diagnosis of autism.

我认为指出这一点非常重要，因为它真正表明自闭症并不只符合你脑海中那种单一的形象。

And I think that's so important to point out because it really shows that autism does not just fit one picture that you may have in your mind about what autism looks like.

我最喜欢的一句话是：你见过一个自闭症孩子，你就只见过一个自闭症孩子。

And one of my favorite quotes is if you have met one child with autism, you've met one child with autism.

对吧？

Right?

同一个诊断，但每个自闭症患者都截然不同。

Like, single diagnosis, every single person with autism is very different.

所以对我们来说，这种冲突可能表现为诊断延迟，因为我们心中有一个关于自闭症的教科书式定义。

And so I think the way it clashed for us was really maybe a delay in diagnosis because we had this picture textbook definition of what autism may look like.

但当奥利弗接受专家评估时，我们发现他确实患有自闭症。

But when Oliver was evaluated by a specialist, we actually found that he did have autism.

一旦我们得到这个诊断，就帮助我们获得了必要的资源，帮助他发挥最大潜能。

And once we received that diagnosis, it helped us to get resources in place to help him reach his fullest potential.

是的。

Yeah.

你知道吗，你以这种方式提到这个关于自闭症儿童的引语真的很有趣，因为这正是我在工作中遇到的发展和神经科同事教给我们的。

You know, it's so interesting that you bring up that quote in that way of thinking about children with autism because that is one thing that our developmental and, you know, neurology colleagues where I work have taught us.

我们正在越来越深入地理解自闭症真正的广泛性。

We are understanding so much about how much of a spectrum this truly is.

这确实没错。

And it's so true.

你见过一个自闭症孩子，你就见过一个自闭症孩子。

One you've met one child with autism, you've met one child with autism.

他们每个人的表现都可以截然不同。

They can all present so differently.

所以我觉得你提到这一点真的非常重要。

So it's just so important that you bring that up, I think.

告诉我，你当然熟悉这些数据，因为你作为医生和传播者，必须了解这些信息。

And tell me, you're of course familiar with the data because you need to be to do your job as a physician and as a communicator.

而且这也是因为自闭症对你的家庭产生了影响，对吧？

And because of the way that this has impacted your family, right?

我的意思是，你必须熟悉你所扮演的每一个角色所涉及的数据。

I mean, you have to be familiar with the data from all the different hats that you wear.

在最近几十年里，自闭症的诊断率显著上升。

We've seen autism diagnosis rise significantly in recent decades.

是什么导致了这种上升，汤米？

What's behind that rise, Tommy?

是的。

Yeah.

这是个很好的问题。

That's a wonderful question.

埃迪丝医生提到的这种上升趋势是，现在我们发现大约每三十五到三十七个孩子中就有一个被诊断为自闭症，如果你看看四十年前的数据，似乎现在被诊断出自闭症的人数多了很多。

And so the rise that doctor Edith is talking about is that now we see that about one and somewhere between, like, thirty five and thirty seven children will be diagnosed with autism, which if you look at just the numbers and look back from forty years ago, it would seem that it is so many more people that's being diagnosed with autism.

但背后其实有很好的解释，其中一个主要原因是认知度的提高。

But there's really good explanations behind that, and a lot of it would be one would be awareness.

现在几乎每个人都知道自闭症了。

Just about everyone knows about autism now.

孩子们不仅了解自闭症，而且不再害怕隐瞒诊断结果。

And children not only know about autism, but we're not afraid to hide the diagnosis.

我们不再害怕公开为孩子患有自闭症而感到自豪。

We're not afraid to be loud and proud about our children having autism.

因此，对自闭症的了解是关键因素之一。

So awareness about autism is one of the key things.

另一个因素是筛查技术的改进。

Another thing would be improved screening.

如今，从儿科医生诊所到学校筛查，筛查的范围和质量都远超三四十年前。

So screening all throughout pediatrician's office, even in school screening, there's a lot more screening and better screening that is happening now than what was thirty, forty years ago.

因此，我们所看到的并不是更多新发病例，仿佛孩子们以前没有自闭症。

And so what we're seeing is not necessarily more new diagnoses as if the children previously didn't have autism.

而是他们更早地得到了诊断，并获得了所需的干预治疗。

It's just that they are actually being diagnosed earlier and getting the therapies they need.

另一个方面是诊断标准的变化：过去我们有多种不同的诊断，而现在这些都被归入自闭症谱系障碍这一类别。

Another aspect of it would be with the changes in the diagnosis criteria that we used to have a lot of different diagnoses, and those different diagnoses are now put into one autism spectrum disorder.

因此，将这些诊断归为一类也会错误地抬高被诊断为自闭症的人数。

And so lumping those diagnoses into one diagnosis also would falsely elevate the actual number of people being diagnosed with autism.

所以，我们看到的并不是自闭症发病率真正上升，即并不是更多孩子患上了自闭症。

So it's not that we're seeing a true rise in autism rates as in more children are developing autism.

只是由于这些因素，更多人得到了诊断。

It's just that more people are getting diagnosed with it because of those factors.

是的。

Yeah.

我经常被问到下一个问题，我相信你也会问这个问题：自闭症的原因是什么？

And the next question I always get asked, and I'm sure you can ask this question as well, is what are the causes?

对吧？

Right?

所以，当我们讨论诊断标准的扩展、诊断数量的上升以及我们如何解释这些现象时，父母们在听了我们的解释后，仍然会坐在那里说，是的，完全理解。

So now that we're talking about expanding criteria, as you just explained so clearly and a rise in diagnosis and how we explain it, parents still, you know, after we say this and explain this to them, you know, they'll sit there and they'll say, yeah, totally.

这说得通。

That makes sense.

我们的诊断更精准了。

We have better diagnosis.

我们的筛查做得更好了。

We're doing better screening.

我们把更多孩子归入这个谱系，对吧？

We are putting more children under this umbrella, that this is a spectrum, right?

但我仍然想了解病因。

And yet I still want to understand the causes.

那么，科学实际上揭示了哪些因素会导致自闭症？

So what does the science actually show about what leads to autism?

是的。

Yeah.

我首先要说的是，科学总是在不断发展。

The first thing that I'll say is science is always evolving.

但就目前而言，我们所掌握的科学表明，自闭症的定义是一种神经发育障碍，会影响儿童与世界沟通、体验和互动的方式。

But as it currently stands, the science that we have would show the definition of autism would be that it's a neurodevelopmental condition that impacts the way a child communicates with the world, experiences the world, and interacts with the world.

因此，他们在与外界言语交流的方式上也存在差异。

And with that, they have differences in the way they verbally communicate with it.

此外，通常还伴有限制性或重复性行为。

And then there's usually also restrictive or repetitive behaviors.

这两类特征是我们诊断自闭症的关键依据。

And those are two kind of big categories that help us diagnose autism.

因此，一旦你有了关于自闭症的这个框架，接下来就会问：这些神经发育差异的成因是什么？

And so once you have that framework of what autism is, then it goes into, well, what is the cause of those neurodevelopmental differences?

我们知道有许多因素可能与自闭症的成因有关，同时也知道一些不会导致自闭症的因素。

And so there are a multitude of things that we know that could potentially lead to the cause of autism and then things that we know that do not cause autism.

首先，其中一些因素是遗传因素。

And so some of the things that number one would be genetic factors.

随着研究不断深入和新成果的涌现，我们了解到有多个基因与自闭症风险升高相关，并很可能导致自闭症诊断。

As research continues and continues to come out, we know that there are multiple genes associated with a higher risk of autism and likely leads to the autism diagnosis.

但除了遗传因素这一主要影响因素外，还有环境因素也起着作用。

But outside of genetic factors, we know are the main contributing factor, there are also environmental factors.

这些因素有很多，我只列举几个，但实际上还有很多。

And there are a multitude of these, and I'll just list a couple, but there are a lot of them.

其中一个就是父母的年龄，包括母亲和父亲的年龄。

One would be parental age, so maternal and paternal age.

因此，年龄越大，风险越高。

So a higher age would increase the risk.

此外，孕期的各种并发症也可能增加风险，比如孕期出现极高烧热、感染、极低出生体重或早产。

Also, different complications during pregnancy, and so that could be extremely high fevers during pregnancy or infections during pregnancy, very low birth weight or prematurity.

所有这些都可能增加孩子日后发展出自闭症的风险。

All of those could increase the risk of a child developing later on down the road.

这只是一个简短的列表。

And those are just a short list.

还有许多其他因素。

There are multitude of others.

我经常告诉家长的一点是，这一切并不是你们任何人的错。

Something I also always like to tell parents is that there's nothing that you did that caused this.

不幸的是，这与遗传和环境因素有关。

Unfortunately, it is genetic and environmental.

我知道，每当我们的孩子得到诊断时，我们都会感到内疚，但我只想让你知道，你并没有做任何导致这种情况的事情。

I know that whenever our child gets a diagnosis, we feel the guilt upon us, and I just want you to know that there is nothing that you did that led to this.

在新闻中，我知道你们可能也看到很多关于泰诺导致自闭症、疫苗导致自闭症的头条新闻。

And in the news, I know that you guys have also probably seen a lot of headlines about Tylenol causing autism, vaccine causing autism.

这些说法我们都有大量数据证明是不正确的，孕期服用泰诺并不会导致自闭症。

These are both things that we have a lot of data that show that that is not true, that Tylenol during pregnancy does not cause autism.

而他们所引用的研究并未考虑混杂因素。

And the study that they pointed to did not account for confounding factors.

所以对听众来说，这意味着可能有一位母亲在孕期感染了疾病，并且出现了高烧，然后服用了泰诺。

And so for the listeners, what that would mean is that you have maybe a mom that had an infection during pregnancy, and maybe they had a really high fever, and then they took Tylenol.

因此，将后来孩子被诊断为自闭症归咎于泰诺，却不考虑高烧或感染的存在，这是没有道理的。

And so saying that Tylenol led to the diagnosis of autism later, but not counting for the high fever or infection doesn't really make sense.

因此，许多这类研究都没有考虑到这些混杂因素。

And so a lot of those studies do not account for those confounding factors.

当我们看疫苗时，有大量、大量的数据表明，疫苗并不会导致自闭症发病率上升，也不会引发自闭症。

And then when we look at vaccines, we have endless, endless data showing that vaccines do not lead to an increased rise of autism and does not cause autism.

这可能会让人非常困惑，尤其作为父母，当你有一个孩子，却想不起来任何这些风险因素——也许你不记得孕期有过发烧或感染，也不记得有远亲曾被诊断为阿斯伯格综合征，而你的孩子起初发育正常，但在十二到二十四个月大时，你开始注意到一些发育迟缓。

And this can be really confusing, and it can be really hard to understand, especially as parents when you have a child and maybe you do not remember any of these risk factors, or maybe you do not remember having a fever during pregnancy or an infection during pregnancy, or you do not remember a distant cousin that maybe was diagnosed with Asperger's previously, and then you have a child that seems to be developing appropriately, but then around twelve to twenty four months of age, you start noticing delays.

于是你会想，那时候他们打了好多疫苗，是不是疫苗引发了这个问题。

And you're like, well, they were getting a lot of vaccines then, so maybe it was the vaccines that triggered it.

因此，我们在研究中经常看到，研究人员会选取这一群体，专门分析那个时间段的情况。

And so oftentimes what we see in the research is that they will take that population group and look at exactly that timeframe.

是的，他们会考虑疫苗因素，但同时也会考察：孕期发生了什么？

And, yes, they'll account for vaccines, but then also look, well, what happened prenatally?

分娩过程中发生了什么？

What happened during intrapartum?

看看家族史，比如所有家庭成员的病史。

Look at the family's you know, like, all the family members' history.

有没有人患有自闭症？

Was there any autism?

家族中是否有任何发育迟缓的情况？

Was there any developmental delays in any family members?

当我们考虑所有这些混杂因素时，我们会发现疫苗实际上是异常值，并没有导致这种情况，但其他一些风险因素很可能确实起到了作用。

When we look at all these confounding factors, we see that the vaccines actually were the outlier and didn't contribute to it, but there were other risk factors that very likely did contribute to it.

是的。

Yeah.

我很高兴你这样解释，还有那些研究，以及你刚才提到的这种分析方式——到目前为止，已经对数十万、甚至可能数百万名儿童进行了研究，对吧？

And I'm so glad that you explained it that way and those studies and the way that you just talked about looking at it has been looked across thousands and thousands, I should say hundreds of thousands, probably millions of children at this point, right?

并不是我们只选取了几个孩子来观察疫苗是否是异常因素，而其他因素才是更好的解释，而是这种研究已经在成千上万项国家级和国际级研究中反复进行过了。

It's not that we've taken a couple of children to see whether vaccines were the outliers and everything else was a better explanation, so to speak, is that this has been done over hundreds of thousands of national and international level type of studies.

医生。

Doctor.

埃迪丝，我再快速提一下，一开始我就说过，自闭症是一种神经发育障碍。

Edith, really quickly, something I also wanted to mention is that at the very beginning, said that autism is a neurodevelopmental disorder.

对吧？

Right?

因此，我们早在怀孕早期，甚至整个孕期，都能了解到孩子的大脑正在发育。

And so we know very early on during pregnancy and really throughout pregnancy, the child's brain is developing.

因此，当某些风险因素出现时，神经发育的变化可能会影响大脑的发育方式，进而导致日后出现自闭症。

And so neurodevelopmental changes, when some of these risk factors may arise, can impact the way that the brain is developing and then lead to autism down the road.

因此，通常是由遗传易感性与环境因素共同作用，影响神经发育，最终导致自闭症。

So it's usually a genetic predisposition with this environmental factor that affects the neurodevelopment leading to autism down the road.

是的。

Yeah.

不。

No.

当然。

Absolutely.

我也在想，汤米，当你在现实生活中与家庭交流时，对吧？

I also wonder, Tommy, like, when you're talking to families in real life, right?

你和我都看到过许多家庭在应对他们在网上接触到的信息时感到困惑。

You and I both see families wrestling with information that they encounter online.

你认为，尽管几十年来有大量高质量的研究已经驳斥了疫苗与自闭症之间的关联，但关于疫苗和自闭症的谣言为何仍然如此根深蒂固？

Why do you think myths about vaccines and autism remain so persistent even after decades of high quality research that disprove them as we're talking about?

是的。

Yeah.

我认为其中一个原因是社交媒体。

I think one would be social media.

我们知道，谣言传播的速度比事实信息更快。

We know spreads faster than factual information.

自从那项被广泛引用的研究——尽管后来被彻底推翻——让‘疫苗导致自闭症’这个说法变得流行起来，这个谣言就通过社交媒体持续传播，人们不断转发它。

And with this myth going on from way back when when the study that's been throughout kind of made it really popular to say that vaccine caused autism, I think that myth just carries on through social media, and people retweet it.

人们在社交媒体上反复转载，导致人们不断看到这些信息。

People repost it on social media, so people see it all the time.

另一个问题是，不幸的是，当自闭症被诊断出来，或者我们开始观察到孩子可能患有自闭症的迹象时，往往正好是接种疫苗的时间，这真是一个不幸的巧合。

And the other thing is that, unfortunately, when autism is diagnosed or when we start to see the signs and symptoms that a child may have autism coincides when we give vaccines, and that is an unfortunate coincidence.

因此，当家庭成员目睹并经历了这种情况时，很难不把这两件事联系起来，尤其是当你已经在网上看到了大量错误信息，又亲身经历了这样的时间点，你的大脑就更难区分个人经历与数百万人群的科学研究结果。

And so when a family member sees that and experiences that, it's really hard not to put the two together, especially when you've already witnessed and saw all the misinformation online, and then you personally experience it, it's really hard for your brain not to make those two connections and to separate your lived experience and what you saw happen with the, you know, research upon millions upon millions of people.

因此，值得注意的是，也要观察未接种疫苗儿童的自闭症发病率，发现他们同样会患自闭症，并非只有接种过疫苗的儿童才会得自闭症。

And so something that's important to note is also looking at autism rates in unvaccinated children and seeing that they do have autism as well, and it's not just the children with vaccines that get autism.

所以，不幸的是，当我们开始观察到发育迟缓时，恰好与接种疫苗的时间重合。

So, unfortunately, when we start to see developmental delays, does coincide when we get vaccines.

但这正是因为我们在儿童处于发育风险最高的阶段时进行疫苗接种，而这个阶段正是他们经历发育关键期的时候。

But that is because we vaccinate children when they are at the highest risk, and that is when they're going through those developmental years.

是的。

Yeah.

你知道，我总是会说，作为一位母亲，我理解你想要找到一个原因、一个解释的需求。

You know, I always sort of say, I I understand the need as a mom, right, to have a cause, a reason.

就是这件事。

This was the thing.

对吧？

Right?

但正如你提到的，目前我们已经知道，疫苗并不是自闭症的原因。

But, yes, as you mentioned, at this point, we know vaccines are not the cause of autism.

埃迪丝医生也理解这一点。

And doctor Edith, understand that as well.

比如，我和我妻子在得知儿子患有拉姆舍弗综合征时，我们搜寻了所有可能造成这一诊断的原因。

Like, my wife and I, when we received our son's diagnosis of Lam Shaffer syndrome, we searched for everything that we could have done that led to him having this diagnosis.

即使我们知道这是基因缺失造成的，我们仍然去寻找。

And even though we knew that it was a deletion in a gene, we still looked.

作为人类，我们总是很快地试图把责任归咎于自己。

Like, as humans, we are so quick to try to put the blame on ourselves.

我们到底做了什么，才导致孩子遭遇这种情况？

And, like, what did we do that caused this to happen to our child?

坦白说，很多时候，答案是什么都没做。

And, you know, truthfully, oftentimes, the answer is nothing.

你并没有做这些事。

Like, that you did not do this.

让你的孩子远离感染并接种疫苗，并不是导致这种情况的原因。

It wasn't you ensuring that your child was safe from infections and getting them vaccinated that caused this.

也不是因为你怀孕期间服用了泰诺才导致这种情况的。

It wasn't, you know, that you took Tylenol during pregnancy that led to this.

这些都不是原因。

It wasn't any of these things.

不幸的是，这仅仅是他们出生时的基因决定的。

Unfortunately, it was just the way that they were born and that their genetics likely led to this.

就像我们的儿子一样，尽管兰谢弗综合征和自闭症是两种不同的情况，我仍然可以把自闭症也包括在内，因为我和我妻子曾竭尽全力寻找我们做过的导致这一切的事情。

And just like our son, even though Lam Shaffer syndrome and autism are two different things, I could still include the autism in this even though my wife and I searched high and low for things that we did that caused this.

尽管我是医生，知道这是遗传因素造成的，但要接受这一点、努力不去寻找是我们做错了什么才导致这种情况，仍然非常艰难。

Even though I'm a physician and know it was genetic causes, it was still hard for us to wrestle with and try not to find something that we did that caused this.

是的。

Yeah.

不，完全正确。

No, absolutely.

我非常感谢你分享这些。

And I so appreciate you sharing that.

我们需要短暂休息一下。

We need to take a quick break.

请继续关注我们。

Stay with us.

当孩子发烧时，可能会让人感到压力，但你可以采取一些措施让他们更舒适，比如提供充足的液体以防止脱水，给他们穿轻薄的衣服，并避免使用酒精擦浴或冰袋等过时的方法。

When your child has a fever, it can be stressful, but there are things you can do to keep them comfortable, like giving them plenty of fluids to prevent dehydration, dressing them in lightweight clothes, and avoiding outdated methods like alcohol baths or ice packs.

像对乙酰氨基酚这样的退烧药也有助于缓解症状，只要按说明使用就是安全的。

Fever reducing medicines such as acetaminophen also can help and are safe when used as directed.

并非每一场发烧都需要看医生，但如果你对孩子的发烧有任何疑问，请与儿科医生沟通。

Not every fever requires a doctor's visit, but talk with your pediatrician if you have any questions about your child's fever.

如需更多信息，请访问 healthychildren.org/fever。

For more information, visit healthychildren.org/fever.

欢迎回来。

Welcome back.

托尼，到目前为止，我们一直在讨论那些正在考虑给孩子接种疫苗的家庭，他们听到了网上流传的这些谣言和错误信息。

And Tony, so far we've been talking about, you know, families who are considering vaccinating, who are hearing these myths and misinformation spread online.

我也想知道，您能否谈谈当错误信息在抚养自闭症儿童的家庭中 unchecked 传播时，会带来哪些危险？

I wonder also if you can talk a little bit about what the dangers are when the wrong information spreads unchecked for families that are raising children with autism.

是的。

Yeah.

您对此有切身体会。

You know that firsthand.

那么这些危险是什么？

So what are the dangers?

当错误信息在那些已经抚养自闭症儿童的家庭中传播时，会造成什么伤害？

What is the harm there when the wrong information spreading for those families who are already raising children with autism?

对。

Yeah.

所以我想从最根本的地方说起。

So I'm gonna start at the very beginning.

其中一个就是关于疫苗接种。

So one would be just with the vaccination.

因此，显然如果他们听信了错误的信息，害怕给孩子接种疫苗而选择不接种，就会使孩子面临多种感染的风险，这些感染可能带来严重的不良后果，这一点我们大家都很清楚。

And so obviously, if they've heard the wrong information to where they are afraid of getting their child vaccinated and they choose to not get them vaccinated, that puts them at risk for multiple different infections, which could have serious adverse effects, which we all pretty much know.

第二个是未经监管的治疗方法。

The second would be unregulated treatments.

当这些错误信息传播开来，而他们的孩子患有自闭症时，他们往往会转向互联网寻找治疗方法，但很多所谓的疗法并没有科学依据。

And so when this misinformation is spread and their child has autism and they look to the Internet, oftentimes, you'll see different treatments for autism that may not be backed by evidence.

因此，很多人会因此购买补充剂、其他在线产品或进行排毒治疗。

And so a lot of times that may lead to buying supplements or buying other things online or detoxes.

我经常看到有人声称这些方法能治愈或改善孩子的自闭症症状。

I see all the time of people swearing that this is gonna cure or improve their child's autism symptoms.

但不幸的是，这种做法的风险在于服用未经监管的药物，也可能带来不良影响。

And, unfortunately, the risk behind that would be taking unregulated medications that could also have adverse effects.

第二个是经济成本。

Second would be the financial cost.

这些排毒疗法或补充剂通常价格极其昂贵。

Oftentimes, these detoxes or supplements can be extremely costly.

在一个如此脆弱、渴望为孩子找到一切改善方法的家庭中，他们可能会花很多钱去寻找那些根本不存在、也没有科学依据的‘解决方案’。

In a family that is so vulnerable and wanting to do everything to get their child improvement, they could, you know, spend a lot of money trying to find that fix that just isn't real and is not evidence based.

第三点是行为疗法的延误。

And the third thing would be delay in behavioral therapy.

有许多不同的疗法可以帮助自闭症儿童，确保他们进入合适的教育项目，比如获得504计划或物理治疗、作业治疗、语言治疗、ABA疗法等，这些我们都知道能显著改善自闭症儿童的生活质量；但如果父母相信那些缺乏科学依据的替代疗法或‘治愈方法’，就可能延误这些重要的干预。

So there are multitudes of different therapies that could help children with autism and to get on the right program in schooling to make sure that they have, like, a five zero four plan or a, you know, physical therapy, occupational therapy, speech therapy, ABA therapy, all of these different therapies that we know greatly improve lived experiences of children with autism, and it could delay those therapies if parents believe that they could seek alternative treatments or fixes that may not be evidence based.

因此，即使不考虑疫苗接种的问题，这些错误信息也会导致本可提升这些儿童生活质量的疗法被拖延。

And so even outside of just the vaccination standpoint, this misinformation lead to delay in therapies that could benefit the quality of life of these children.

我还要补充最后一点：错误信息不仅涉及自闭症的诊断和治疗。

One last thing that I'll also say is that misinformation isn't only about diagnosis and treatment of people with autism.

它还关乎我们如何在群体层面上描述和谈论自闭症人士。

It's also how we characterize them and talk about them at a population level.

尤其是在过去六个月的新闻报道中，我们看到这些儿童和自闭症人士被描述为社会的负担。

And in the news, especially over the past six months, we have seen the way that these children and way that the people with autism are discussed is a burden to society.

并且认为自闭症必须被‘治愈’，因为它是社会的负担——这完全是错误的。

And that autism should be something that needs to be cured and that has to be cured because of this burden to society, and that's completely not true.

仅仅因为一个人有自闭症，并且以不同的方式看待和与世界互动，并不意味着他们低人一等，也不意味着他们是负担。

Just because someone has autism and because they see and interact with the world differently does not make them less, and it does not make them a burden.

这只会让他们被误解。

It makes them misunderstood.

他们最需要的，是一个努力去理解他们、更好地满足他们需求的世界，而不是试图去修复本不该被修复的东西。

And what they need more than anything is a world that tries and strives to understand them to better meet their needs than try to fix something that's not supposed to be fixed.

是的。

Yeah.

我很高兴你提到这一点。

I'm so glad you brought that up.

我正希望你能这么说，因为我知道你一直在做倡导工作。

And I was hoping that you would because I think, you know, I've watched some of your advocacy.

我相信你所做的远不止这些公开可见的努力。

I'm sure you do so much more that, you know, is not necessarily public facing.

对吧？

Right?

我认为你刚才非常清晰地谈到了这一点，关于我们现在如何描绘自闭症谱系人群，这其实并不是他们真正需要的，也不是他们家庭所需要的。

And I think you've just so eloquently talked about this point, right, of the way that we are portraying people who are on the spectrum right now and really just it not being what they need, right, and what their families need.

所以，暂时换个话题，我想可能有一些听众正在收听。

So to pivot for a moment, I think, you know, there might be people listening.

每次我谈论自闭症时，我相信你也经常遇到这种情况。

I think every time I have a conversation about autism, I'm sure this happens to you as well.

有一些家庭在收听，他们在思考，对吧？

There are families who are listening, are wondering, right?

因为发展本身就是一个谱系，养育孩子有时真的像一段漫长的旅程，对吧？

Because development in general is such a spectrum and sometimes raising kids can be like such a journey, right?

甚至从一个孩子到另一个孩子都不尽相同。

Even from one kid to another kid.

所以他们可能坐在那里，努力了解更多关于自闭症的信息，但最终还是会问：我的孩子会不会有自闭症？

And so they might be sitting there wondering, like trying to learn so much more about autism, but at the end of the day, saying, could my child have it?

我的孩子会不会没有自闭症？

Could my child not have it?

请明确告诉我们。

Tell us just to spell it out.

对吧？

Right?

家庭应该留意哪些迹象和症状，并及时向儿科医生反映。

Signs and symptoms that families should be on the lookout for and bring to their pediatrician.

是的。

Yeah.

我很喜欢这一点。

I love that.

我很高兴你问了这个问题，因为这极其重要。

And I I'm glad you asked this question because it is extremely important.

在讨论这一点之前，我想说的是，不要犹豫，立即向儿科医生提出评估请求，或者表达你对孩子与众不同、可能患有自闭症或存在发育迟缓的担忧。

One thing that I'll say before I even discuss this is do not hesitate to ask your pediatrician for an evaluation or raise concerns that you think that your child is different or may have autism or that you're noticing some delays.

别犹豫，因为即使你错了，最坏的情况也不过是孩子接受一次评估来确认你确实想多了。

Like, do not hesitate because even if you're wrong, the worst that happens is that they get an evaluation to make sure that you are wrong.

对吧？

Right?

是的。

Yes.

但如果确实确诊了，尽早开始治疗和干预将带来巨大好处。

But if they do have the diagnosis, then they get treatment and therapies as early as possible, which is a huge benefit.

因此，你需要关注的一些早期迹象包括语言发育迟缓。

And so some of the first things that you need to be looking for would be speech delay.

语言发育迟缓在自闭症儿童中非常常见。

So speech delay is extremely common in children with autism.

通常，我们会从12个月左右开始留意，虽然12个月已经算很早，但一般在12到18个月之间，如果孩子还没有开始明显发声，就应向儿科医生提出疑虑。

And the speech delay, generally, we'll start to notice between 12 is very early, but somewhere between 12 and 18 if children aren't starting to really vocalize and raising those concerns to your pediatrician.

他们与同龄人或朋友互动和玩耍的方式，可能与他们的兄弟姐妹截然不同。

The way that they interact and play with peers or friends could be extremely different than, like, say, maybe their brother or sister.

因此，你常常会看到一个孩子可能根本不与其他孩子互动。

And so oftentimes, you'll see a child who maybe doesn't interact with another child.

他们可能会和另一个孩子在同一间房间里玩，但却是自己一个人，而且玩的方式可能不太恰当。

They might play in the same room as another child, but they're off by themselves and maybe not playing appropriately.

实际上，我觉得现在正好可以拿我儿子作为例子。

And, actually, I think this would be a good opportunity to use my son as an example.

所以，正如我所说，奥利弗非常快乐。

And so Oliver, like I said, is extremely joyous.

我和我妻子当初没有觉得他有自闭症，是因为他非常善于社交。

And why my wife and I did not think that he had autism is because he was extremely social.

意思是，比如我们坐飞机时，他会以自己的方式向飞机上的每一个人打招呼。

Meaning that, like, if we were to go on an airplane, he would want to say hi in his own way to every single person on that plane.

如果飞机有50排座位，他就会说48次‘你好’。

Like, you if the plane had 50 rows of seats, he would say hi 48 times.

明白吗？

Okay?

所以，非常、非常善于社交。

So just like extremely, extremely social.

当我们观察自闭症时，会发现社交互动方面存在差异，其次就是重复或受限的行为。

And when we look at autism, we see that there are difference in social interactions, and then the second would be repetitive or restrictive behaviors.

尽管奥利弗非常善于社交，但他的社交方式却不恰当。

And so even though Oliver was extremely social, he was inappropriately social.

也就是说，他互动的方式并不一定是人们通常的社交方式。

Meaning that the way he would interact would not necessarily be typically how someone would socially interact.

直到一群发育行为儿科医生、心理学家和其他专家聚在一起观察后，我们才意识到这一点。

And that's not something we necessarily caught onto until a team of developmental pediatricians and a psychologist and everybody got together and they kind of witnessed that.

因此，观察社交互动中的差异是一个关键点，其次是重复或受限的行为。

And so I think seeing differences in social interaction is one key and then repetitive or restrictive behaviors.

比如，重复行为：我儿子特别喜欢行李箱，他可以连续几个小时不停地推来推去。

And so repetitive behaviors, for an example, would be so my son absolutely loves suitcases, and he could push his suitcase back and forth literally for hours.

这种来回推行李箱的重复动作。

So this repetitive action of pushing his suitcase back and forth.

另一个例子是捡起石头然后扔掉。

Or another one would be picking up rocks and dropping them.

所以，用手指感受石头的质地并反复丢弃，这也是重复或限制性行为的另一个表现。

So the repetitive behavior of feeling that texture of rocks on his fingers and dropping it would be another sign and symptom of repetitive or restrictive behaviors.

这两类行为在不同孩子身上的表现方式差异极大。

And so those are two big categories and the way that those appeared vary drastically from child to child.

因此，及早发现这些迹象并及时告知儿科医生，可能会非常有帮助。

And so I think picking up on those signs and symptoms early and bringing them to the attention of your pediatrician could be extremely helpful.

是的。

Yeah.

我很高兴你能分享这些例子，顺便说一句，这些例子都很可爱，来自你和奥利弗相处的经历。

And I'm so glad you're bringing those examples, which are adorable, by the way, from, you know, your experience with Oliver.

因为有时候，当你在网上搜索时，他们会说，比如拍手。

Because I think sometimes, you know, when you look online, they'll say, well, and hand flapping.

确实，有些自闭症儿童会转圈或拍手。

And sure, some children with autism do spin and do some hand flapping.

但我认为，他们可能喜欢做的事情范围非常广泛。

But I think there's such a wide range of things that they might like to do.

所以，我们来更广泛地探讨一下限制性兴趣和重复性行为，对吧？

And so expand in it, broaden in it, so to speak, to talk about really just the restrictive interests, right, and the repetitive behaviors.

无论这些表现形式如何，都值得我们留意。

Whatever those may look like are things to be on the lookout for.

是的。

Yeah.

我还想快速提另外两点，就是眼神交流。

And just two other things I would just mention really quickly would be eye contact.

比如，奥利弗可能会和我们说话，但他可能不会直接看着我们的眼睛。

And so even if you know, so, like, Oliver may talk to us, but he may not be looking us directly in the eyes.

年幼的孩子在发育初期可能还没有这种能力，但最终他们应该能够通过眼神交流与你沟通。

And so children at a very young age, they may not have that just developmentally yet, but eventually, they should be able to communicate with you by looking eye to eye.

但自闭症儿童在交谈时可能会看向一侧或别的地方。

But children with autism may look off to the side or look somewhere else while they're having that conversation.

因此，这也可能是自闭症的另一个特征，或者说是整体交流互动困难的表现。

And so that could also be another feature or just difficulty of back and forth communication in general.

是的。

Yeah.

不。

No.

当然。

Absolutely.

你刚才提到过这一点，但我很好奇你能否再详细说一说？

And you started to mention this, but I wonder if you can tell us a little bit more about it.

网上有无数种疗法、项目和宣称，往往价格非常昂贵。

There's countless therapies, programs, claims online, often very expensive things online.

哪些干预措施真正有科学依据支持？

What interventions are truly backed by evidence?

对。

Yeah.

任何发育类疗法，比如物理治疗、作业治疗和语言治疗，都有充分的科学证据支持，确实有助于改善孩子的发育，无论孩子是否患有自闭症，只要存在发育迟缓，这些疗法都有帮助，而自闭症儿童尤其能从中受益。

So any of the developmental therapies, such as physical therapy, occupational therapy, and speech therapy, all of those are backed by evidence, and they do truly help in terms of improving the development of the child, whether they have autism or not autism and just those developmental delays, but children with autism benefit from those therapies.

我还想提一下ABA疗法。

And, also, I want to mention ABA therapy.

是的。

Yes.

我知道，由于几十年前可能存在一些不恰当的干预方式，ABA疗法曾获得负面评价。

I know that it has received a bad reputation from decades past of maybe inappropriate different therapies being interventions for children.

但我相信，如果按照正确的方式实施，ABA疗法非常有益，而且有证据表明，对于对ABA疗法反应良好的自闭症儿童，它可以显著改善他们的生活质量以及与世界的互动方式。

But I believe that ABA therapy constructed how it's supposed to be done is extremely beneficial, and we do have evidence showing that children with autism, if they respond well to ABA therapy, it can drastically improve their quality of life and how they interact with the world.

因此，我们使用ABA疗法。

And so we use ABA therapy.

我认为我们现在每周接受二十到二十五小时的治疗，差不多就是这个时长。

I believe we currently get twenty to twenty five hours a week, somewhere around there.

它对奥利弗的帮助非常大，尤其是在沟通方面，以及他能够坐在餐桌旁吃饭的能力上。

And it has helped Oliver so much just with his communication, with his ability to, say, eat at a table.

即使他吃饭的方式看起来有所不同，但他在这些方面的能力确实得到了提升。

And even though the way he eats may look differently and just his ability to do that.

因此，ABA疗法是另一种有科学依据的疗法。

And so ABA therapy would be another backed by evidence therapy.

是的。

Yeah.

我完全同意。

I couldn't agree more.

我非常支持ABA，即应用行为分析疗法。

Huge fan of ABA, Applied Behavioral Analysis Therapy.

我亲眼看到它为我的患者带来了巨大改变。

I have seen it make a huge difference for my patients.

我真的是非常支持这种疗法。

So huge, huge fan there.

虽然如你所知，获得这种疗法并不总是容易，但当我们能为孩子们提供时，我非常支持。

Not always easy to get, as you probably know, but huge fan when we can get it for kids.

现在，让我们暂时回到你美好的家庭，汤米，在日常生活中，是什么帮助了你的儿子成长，又帮助了你们全家？

Now to go back for a moment to your beautiful family, Tommy, on a day to day level, what has helped your son thrive and what has helped you all as a family?

是的。

Yeah.

我认为有许多因素帮助奥利弗茁壮成长。

I think there are a multitude of things that have helped Oliver thrive.

我认为首要的是拥有一支团队。

And I think number one would be having a team of people.

经历任何诊断都很难独自应对，因此他在学校拥有一支团队，包括物理治疗师、职业治疗师、语言治疗师、水疗师和ABA治疗师。

Going through any diagnosis is hard to do it alone, and so having a team at his school of his physical therapist, occupational therapist, speech therapist, his aqua therapist, his ABA therapist.

拥有这样一支庞大团队，所有人目标一致，都致力于帮助奥利弗发挥最大潜能，我认为这带来了极大的优势。

So having this ginormous team all with the same goal to help Oliver reach his fullest potential, I think, has been extremely advantageous.

另一点是，我们整个团队都明白，奥利弗的诊断并不是需要修复或治愈的问题，而是要作为一个团队去理解他，帮助他以他喜欢并能茁壮成长的方式适应世界，并接受这种适应方式可能与常人截然不同。

Another thing is that with our entire team, knowing that Oliver's diagnosis is not something to fix or to cure, but to try to understand as a team and try to help him navigate the world and navigate in a way that he enjoys and can thrive in and being okay that that may look completely different.

我们知道，也许在课间休息时，奥利弗只是想玩石头，捡起来又放下。

Knowing that maybe at recess, Oliver just wants to play with rocks and pick up and drop rocks.

如果这能带给他快乐，那这也应该带给我们所有人快乐。

And if that brings him joy, that should bring all of us joy.

而不是有一支团队试图改变这一点，说：不行，奥利弗。

And not having a team that tries to change that and say, no, Oliver.

你得去荡秋千，因为其他孩子都在荡秋千。

You need to be swinging because that's what the other kids are doing.

仅仅因为一个孩子喜欢荡秋千，并不意味着奥利弗也必须喜欢，这完全没问题，也很恰当。

Well, just because one kid likes to swing doesn't mean Oliver has to like to swing, and that's completely okay and appropriate.

所以我认为，团队成员步调一致是非常非常重要的。

And so I think having a team on the same page has been super, super important.

另一件可能有点不寻常的事情是，观看或阅读一些有助于世界理解自闭症儿童的资源。

So another thing that's maybe a little atypical, but would be to watch or read resources that helps the world understand children with autism.

其中一个例子是一部叫《不可摧毁的男孩》的电影。

And so one example would be a movie called The Unbreakable Boy.

每当我观看这部电影，光是想到它就会让我流泪，但作为儿科医生，作为自闭症孩子的父亲，我希望自己已经尽了最大努力去理解奥利弗，理解他如何与世界互动、如何看待世界。

And when I watch this movie, it's gonna make me cry just thinking about it, but I would love to think that as a pediatrician, as a father to a child with autism, that, like, I did my best to understand Oliver and how he interacts and sees the world.

但我真的相信，在看过《不可摧毁的男孩》这部电影之前，我从未真正理解过他的思维有多么复杂和美妙。

But I truly do not believe I understood how intricate and how wonderful his mind operates until I watched the movie, the Unbreakable Boy.

因为你看到这位父亲，他经历了这些挫折，努力理解自己的孩子，挣扎着接受孩子与众不同的事实，最终真正开始用孩子的眼光去看这个世界。

Because you see this father, you know, have these frustrations and trying to understand his child and trying to just wrestle with the idea that his child is different come to really see the world through his child's eyes.

当我看完这部电影时，它真的让我明白，奥利弗喜欢捡起石头再扔掉，是因为他双手感受到的触觉刺激强烈地冲击着他的身体，让他感到无比平静。

And, like, when I watched that movie, it truly helped me understand that, man, Oliver loves to pick up rocks and drop them because the sensation that he feels in his hands overwhelms his body and makes him feel so at peace.

当他荡秋千时，充满喜悦，可以连续荡上几个小时，对他来说，那种感觉可能就像乘坐飞机穿越最美妙的日出或日落。

Or when he swings and is just filled with so much joy and could do it for hours, it may feel like he's on an airplane flying through the most beautiful sunrise or sunset ever.

因此，让家庭真正去理解他们的孩子是不同的，而这种不同是如此美好。

And so just having families go through and truly try to understand their child as different and that difference being so beautiful.

当我们没有看到这种美时，并不是因为它不美。

And when we don't see it as beautiful, it's not because it's not beautiful.

而是因为我们还没有理解，还没有看到其中的美。

It's because we just don't understand or see the beauty in it yet.

如果我们能打开心扉，用眼睛和心灵去发现这种美，我认为我们就能真正改变世界看待自闭症儿童的方式。

And if we could open our eyes and our hearts to see that beauty, I think we could truly transform the way the world sees children with autism.

是的。

Yeah.

天哪，汤米。

Oh my gosh, Tommy.

我们正在讨论这个话题，而我知道你清楚我目前怀孕了，你所说的关于重新理解快乐的方式，以及你的孩子将如何与世界互动，还有我们所有人都希望孩子能以让他们感到快乐的方式体验世界，这真的非常重要。

We're having this conversation, and I am very pregnant, as you know, and you know, the way that you're talking about really, you you're talking about a reframing of your understanding of joy and how your child will interact with the world and what we all want for our kids, which is to experience the world in a way that is joyful to them.

我认为这种视角的转变太重要了，而且我现在情绪有点激动，因为现在激素波动让我特别敏感，但我真的非常感激你如此清晰地分享你和奥利弗的经历，以及这种育儿视角的转变——它不仅发生在自闭症儿童的家庭中，也发生在许多其他医疗状况不同的家庭中。

And I think that reframing, gosh, is so important and I'm also going to get emotional because I'm a hormonal mess right now but I'm just so grateful that you are speaking so eloquently about your experience with Oliver and that reframing of parenting really that happens for so many families, not just with children with autism, but with so many other differences in medical conditions.

所以我真的非常感谢你。

So I'm really just so grateful to you.

我想像往常一样，用一个育儿建议来结束我们的节目。

I wanted to end our show like we always do with, you know, a parenting prescription of something you want parents to remember.

我真的想不出比我们今天这场关于育儿视角转变的真诚坦率对话更适合结束节目的方式了。

I truly can't think of a better way to end our show than this very honest and candid conversation we're having about a reframing of parenting, really.

但汤米，你还有什么想补充的吗？关于如何更好地理解自闭症儿童？

But is there anything else, Tommy, that you wanna add to our understanding of kids with autism?

我想重申我刚才说的所有内容，但我也想以一种不那么乐观、不那么欢快的方式，真实地告诉各位父母：为孩子未来原本预期的样子感到悲伤，是完全可以的。

So I wanna reiterate everything I just said, but I also want to and this won't be my optimistic, joyful, usual note, but I want to be real with parents and let them know that it's okay to grieve the expectations of what your child's future you thought it could be.